Download Symptom Control Guidelines and key information in end

SWL Supportive and Palliative Care Group
and SWL Cardiac Network
Symptom Control
Guidelines
and key information
in end-stage heart
failure
2008/2009
Contents
Preface
3
Specific Symptoms
3
Breathlessness
3
Pain
4
Cough
4-5
Nausea and Vomiting
5
Constipation
5
Anxiety and depression
5
Peripheral Oedema
5-6
Dry Mouth
6
Anorexia, Cachexia and Nutrition
6
Terminal Heart Failure – the last few days of life 6-7
Implantable Cardioverter Defibrillator (ICD)
7
Key Information
Useful Resources
2
9
7-8
Appendix 1
Triggers for referral of patients with end stage
heart failure to specialist palliative care
10
10
Appendix 2
Diuretic management in worsening
heart failure and peripheral oedema
Tips for management of resistant
oedema
11
11
Helpful Resources
12
11
Specific Symptoms
Preface
Breathlessness
This guidance is aimed at specialist and
non-specialist health professionals who care
for patients with end-stage heart failure.
It was developed by members of the SWL
Supportive and Palliative Care Group and
SWL Cardiac Network. Neither the authors,
SWL Supportive and Palliative Care Group nor
SWL Cardiac Network take responsibility for
the application of these recommendations.
The ultimate responsibility lies with the health
professionals who assess, manage and deliver
care. If further advice is required please contact
your local specialist palliative care team or
cardiac specialist. Triggers for referral to specialist
palliative care services are included as Appendix 1.
The management of breathlessness includes identifying
Introduction
DSymptom control for patients with end-stage heart
possible causes other than heart failure such as
pharmacological causes eg B-blockers, anaemia,
fatigue and psychological causes including anxiety.
Non-pharmacological management
DBreathing retraining.
Dlifestyle adjustments- educate the patient to adjust and
conserve energy for activities which are important to them.
DPsychological support - appreciating impact on lifestyle.
DEnable patient to feel in control by reducing anxiety
and panic.
DRelaxation and distraction techniques.
DComplementary therapies.
failure should continue in conjunction with optimal
heart failure treatment. This is the first step to
DFan.
achieving good symptom control. This may include
diuretics, ACE inhibitors etc as long as these
medications remain appropriate.
DThe burden of chronic heart failure has physical,
DWhere appropriate planned exercise programmes e.g.
breathlessness management groups.
Pharmacological management
psychological, social and spiritual dimensions which
Low dose oral morphine solution - commencing at
need to be considered when planning
initial dose of 2.5mg 4 hrly, dose may be increased if
symptom management.
well tolerated.
DMorphine is excreted renally. Seek advice if renal function poor or if there are signs of opioid toxicity.
DCo-prescribe regular laxatives when commencing regular strong opioids.
DSublingual lorazepam 0.5 - 1mg prn to max 4mg
per day - especially if elements of anxiety or panic. May cause sleepiness.
DDiazepam 2mg po - once a day if background
anxiolytic required.
DHumidified oxygen if hypoxic - starting at 24% and
continuing at this concentration if co-existent COPD.
Consider use of nasal specs.
DGTN spray 1 - 2 puffs prn. May be effective in
acute pulmonary oedema. Beware of hypotension.
Contraindicated in severe aortic stenosis.
3
Pain
Studies have shown that up to 78% of patients with heart
DA multi-disciplinary approach to pain control is often
failure experience some degree of pain. Probably due to a
necessary e.g. Physiotherapists, Occupational
combination of angina, liver capsule distension, lower limb
Therapists, Social Workers, Chaplaincy Teams etc.
oedema, inactivity and co-morbidity diseases, e.g. arthritis.
DRemember to consider other causes and pathologies in
DWhen assessing the patient consider psychological,
addition to heart failure.
emotional and spiritual aspects that may be influencing
DFollow the WHO Analgesic ladder (figure 1).
Figure 1: WHO Analgesic Ladder
STEP 3
Strong opioid + step 1 analgesia
+/- co-analgesics
STEP 2
Weak opioid + non-opioid (step 1)
+/- co-analgesics
STEP 1
Non opioid (e.g. paracetamol)
+/- co-analgesics
For STEP 1
DStart treatment with paracetamol 1g every 4 hours REGULARLY. (Max daily dose 4g).
Pain persisting or increasing
the pain.
DNon-steroidal anti-inflammatory agents including COX II
inhibitors can worsen heart failure and renal function so
should be best avoided. Should only be considered in a
terminal care situation.
DIf this is not adequate in 24 hours, stop and proceed
to STEP 2.
NB: for more information on pain control and the use
of co-analgesic therapy please see the Palliative Care
For STEP 2
D Start treatment with a combined preparation of
paracetamol with codeine or dihydrocodeine.
Guidance (Watson, Lucas and Hoy, 2006).
Cough
Cough is often attributed to ACE inhibitors. However,
DIf this is not adequate, stop and proceed to STEP 3.
patients should be assessed for other causes before they
are discontinued, especially in patients who have been
For STEP 3
taking them long-term. Prolonged bouts of coughing are
DFor patients who are opioid naive commence oral morphine
exhausting and frightening.
solution 2.5mg up to 4 hourly, titrate up as necessary.
Management
CCaution should be exercised in patients who are elderly or in renal failure. Reduce dose / dose frequency
This will depend on the cause of the cough. It is important
to distinguish if it is a productive, wet or dry cough.
in renal impairment.
DIf related to difficulty expectorating and patient is still
DFor further advice regarding alternative opioids contact the Specialist Palliative Care Team
able to cough effectively - nebulised Normal Saline
0.9% - 2.5mls PRN may help to loosen tenacious
mucus and aid expectoration.
DRemember to prescribe regular laxatives when
using regular opioids.
4
DCough suppressants - (for dry irritable cough)
Anxiety and Depression
Simple linctus 5 - 10 mls PRN to qds
It is normal for a patient to experience anxiety when living
Codeine linctus 5 - 10mls PRN to qds
with a life limiting illness. It is common for a number of
Low dose oral morphine solution - starting dose 2mg PRN.
reasons including the fear of uncontrolled symptoms and
Low dose methadone at night - starting dose 4mg nocte
being left alone to die. Anxiety becomes a problem when
Nausea and Vomiting
its duration and severity exceeds normal expectations. It is
important to explore underlying issues and deal with these
Nausea and vomiting are symptoms that cause patients
if possible, by means of a holistic approach involving all
and family members much distress. Patients may have
appropriate members of the multidisciplinary team.
multiple causes of nausea and vomiting. Therefore, it is
It is important to provide time for patients to express their
important to identify the possible causes, treat reversible
worries and concerns. Relaxation techniques, various
causes (e.g. constipation, infection, anxiety etc.) or
complementary therapies if available and drug therapies
commence appropriate therapy.
may help. Anxiety can also be a feature of underlying
depression. Depression is a major symptom for patient
DConsider current drug cause for nausea and vomiting
and review.
DIf nausea predominantly caused by renal impairment or
drug induced: haloperidol 1.5mg orally/sc nocte
DIf nausea or vomiting related to eating, gastric stasis,
early satiety or hepatomegaly consider
with heart failure and is associated with increased
readmission rates and an increased mortality.
Drug therapies may be helpful to break the anxiety cycle
and restore sleep:
Anxiolytics
Lorazepam 0.5-1mg sublingually for panic attacks
Metoclopramide 10mg po/sc tds
Diazepam 2mg po once a day - for background
Domperidone 10mg po tds
anxiety
N.B. AVOID CYCLIZINE AS THIS MAY WORSEN
Night sedation
HEART FAILURE.
Lorazepam 0.5 - 1mg nocte
Constipation
Or Temazepam 10 - 20mg nocte
Complications of constipation include pain, bowel
Antidepressants.
obstruction, overflow diarrhoea and urinary retention.
Sertraline 50mg o.d.
All these symptoms can cause much concern and distress
Or Citalopram 10 - 20mg o.d.
for patients and family members and therefore should
Or Mirtazapine 15 - 30 mg nocte
be prevented where possible. Patients with heart failure
can become constipated due to poor mobility, poor fluid or
N.B. AVOID TRICYCLIC ANTIDEPRESSANTS IN VIEW OF
dietary intake or their drugs e.g diuretics and opioids.
CARDIOTOXIC SIDE-EFFECTS
DThe choice of laxative will depend on the cause.
Peripheral Oedema
Patients may need:
Patients with heart failure may present with peripheral
oedema in the arms, legs and genitalia.
-a stool softener – e.g. docusate sodium 100 200mg o.d. – t.d.s.
Management strategies
DAdjustment to diuretics (Appendix 2)
-a stimulant laxative eg senna 2 tablets or
10mls nocte
-a combination laxative e.g. co-danthramer
1-2 capsules or 5-10mls nocte. (licensed for use by
terminally ill patients). Avoid if incontinent of urine
and/or faeces as the danthron in co-danthramer may
cause skin excoriation.
5
DEducation on good skin care is required to prevent
DPatients may develop low cholesterol levels and in these
dryness, cracking and infection.
circumstances statin medication should be discontinued.
E.g. Dry skin – aqueous cream or simple moisturiser
Dry and itchy skin – aqueous cream + 0.5% menthol.
DCompression bandaging may help. This will require
D Small meals, attractively presented.
Terminal Heart failure - the last few days of life
input from DNs or lymphoedema nurse specialists
A high proportion of patients with confirmed heart failure,
if accessible.
up to 40 - 50% in some studies will experience sudden
cardiac death. Others will deteriorate more slowly.
DScrotal support for scrotal oedema may improve comfort.
DNeed agreement within the MD team that the patient
DAn OT, Physiotherapy or Social Work assessment may
is dying.
be required to assist patients and families to adjust to
changes to independence.
DOften difficult accepting that deterioration does not
represent failure to the health care team.
Dry Mouth
A dry, uncomfortable mouth can impact greatly the
DImportant to recognise patients who appear to be
patients’ quality of life. It is important to assess the mouth
approaching terminal phase of their illness. It is more
and consider underlying causes e.g. medication, poor oral
difficult to diagnose dying in heart failure than in many
hygiene, oral candida and oxygen therapy.
terminal cancer patients and to define when they are in
a palliative phase.
Management strategies
DSipping semi-frozen drinks
DIn heart failure, patients may achieve improvement with
medication, may have reversible precipitant.
DSucking ice chips
If recovery uncertain, this needs to be shared with patient
DChewing gum (sugar free)
and family and explore patients wishes in terms of options
for care and place of care.
DPineapple (fresh or tinned) to chew
The subgroup to identify is those patients with:
DOral balance gel or saliva substitute sprays.
- Previous admissions with worsening heart failure.
- No identifiable reversible precipitant.
- Receiving optimum tolerated conventional drugs.
- Worsening renal function.
-Failure to respond within 2 - 3 days to appropriate
DMoisturising cream or soft paraffin to the lips
DSoak dentures overnight
Anorexia, Cachexia and Nutrition
Patients with heart failure may have poor appetite and lose
significant amounts of weight. The focus of earlier dietary
advice may need to be revised on the basis of reassessment.
change in diuretic or vasodilator drugs.
D Fat-soluble vitamins may be appropriate.
D For cachectic patients a high calorie, high protein diet
6
with no added salt may be beneficial.
- Sustained hypotension.
Figure 2: Heart Failure Discontinuation Strategy
Consider 3rd
Consider 2nd
Consider 1st
Continue drugs for short
Weigh up advantages /
Discontinue drugs with
term benefit
disadvantages of continuing
only long term benefit
(morbidity)
drugs with medium term
(Mortality)
benefits (morbidity / mortality)
DLoop and thiazide diuretics
DACE / A2A
DStatins
DDigoxin / beta-blockers in AF
DBeta blockers
DDigoxin in sinus rhythm
DAnti anginals
DSpironolactone
Drugs for co-morbidities
DHypoglycaemics
DAntihypertensives
DThyroxine
DWarfarin
Decreasingly important for symptom control
(Used with permission of Dr Louise Gibbs)
DAs patient becomes weaker and has difficulty
swallowing, need to discontinue non-essential
medications, but continue those which will provide
symptomatic benefit (figure 2).
DIf specialist advice is required please contact your local
specialist palliative care team or cardiac specialist.
Implantable Cardioverter Defibrillator (ICD)
DIf the patient has an implantable cardioverter
DSuch essential medications as analgesia, antiemetics,
defibrillator (ICD) it is important to consider and where
anxiolytics, opioids and diuretics can be converted
appropriate discuss with patient and family when
to subcutaneous doses if appropriate and given
would be an appropriate time to switch this off by a
continuously over 24 hours via syringe driver with
technician. In an emergency situation an ICD can be
PRN doses available.
deactivated by applying a large magnet to the area of
the chest where the ICD has been inserted.
DShould discontinue such inappropriate invasive
procedures as venepuncture and checking of temp, BP
Useful resources
etc. Need to establish inappropriateness of CPR,
DBritish Heart Foundation (2007) discussion document
and may also need to discuss with patient and family
on ‘Implantable cardioverter defibrillators in patients
discontinuing of intravenous hydration.
who are reaching the end of life’ (www.bhf.co.uk).
DNeed regular assessment of symptoms and adjustment
of medications if symptoms not adequately controlled.
Dwww.heartrhythumcharity.org.uk/html/
icd_deactivation.html.
DPsychological support of patient and family very
important. Good clear but sensitive communication
of paramount importance.
DSpiritual care according to patient’s cultural and
religious beliefs important.
7
Symptom control in the last few days of life
Breathlessness
Pain
Nausea and vomiting
Diamorphine at initial dose of 1 -
Diamorphine 1 - 2.5mg sc 4 to 6
Haloperidol 1.5 – 3mg over 24 hours
2.5mg sc 4 to 6 hourly + PRN dose if
hourly if the patient is not on oral
via syringe driver.
not on oral morphine.
morphine, and titrate according to
Levomepromazine 3.125 – 6.25mg
response and pain.
over 24 hours via syringe driver.
If patient is on oral morphine or other
strong opioid, seek advice of Palliative
If patient is already on oral morphine
Care Team regarding appropriate
or other strong opioid, consult
starting dose of diamorphine.
Palliative Care Team for advice on
Retained secretions in upper
respiratory tract
(To calculate dose of subcutaneous
starting dose of diamorphine.
May be of major concern to the
diamorphine divide the dose of oral
morphine by 3).
family, but not distressing for patient.
If patient requiring frequent doses,
Patient too weak to expectorate
consider subcutaneous infusion
secretions. Changing position of bed
If effective, consider commencing
via syringe driver with dose of
or raising head of bed may help,
syringe driver with diamorphine,
diamorphine dependent on
and once patient is semi-conscious
dose dependent on the amount of
requirements in previous 24 hours.
nursing in coma position will
oral morphine and sc diamorphine
be most useful for drainage of
required in previous 24 hours.
retained secretions.
In moderate to severe renal failure
Agitation, terminal restlessness,
delirium
there are alternative opioids available,
Exclude precipitating factors such as
glycopyrronium 0.2 - 0.4mg sc
which are better tolerated. Please
urinary retention, faecal impaction,
stat dose or 0.8 - 2.4mg over 24
seek advice of Palliative Care Team.
pain, uncomfortable position in bed,
hours via syringe driver or hyoscine
and address these appropriately.
hydrobromide 0.4mg sc stat or 1.2
If patient is breathless and anxious,
- 2.4mg sc over 24 hours via
consider lorazepam 0.5mg
If patient agitated or restless consider
sublingually. If unable to tolerate,
midazolam 2.5 - 5mg sc PRN.
consider midazolam 2.5mg sc stat.
If repeated doses required, consider
Especially if element of pulmonary
If effective, this can be repeated or
commencing syringe driver with
oedema, if antimuscarinics not
midazolam given in syringe driver
dose dependent on requirements of
effective consider use of parenteral
with diamorphine if appropriate, the
previous 24 hours.
diuretics. Furosemide can be given
dose dependent on requirements in
the previous 24 hours.
syringe driver.
SC or via a 24 hour syringe driver.
If patient delirious consider
haloperidol 1.5mg sc PRN. If repeated
doses required consider commencing
a syringe driver with haloperidol
3-5mg in 24 hours.
Diamorphine alone is not appropriate.
8
If secretions persist consider
Key information
Continuing Care
Financial Benefits
NHS Continuing Healthcare is the name given to a
Disability Living Allowance (DLA)
package of services, which is arranged and funded by the
DLA can be claimed up to the age of 65. It is divided
NHS alone for people outside hospital with ongoing care
up into two components, care and mobility. The care
needs. Anyone can qualify for the package, regardless
component is for help with personal care and supervision,
of location or diagnosis, provided they have a certain level
and the mobility component is for help with getting
of care needs. This means that a person’s needs are such
around. This allowance is paid at different rates depending
that they are still considered to be an NHS patient, even
on the person’s needs.
though they are not being cared for in a hospital.
DLA can be claimed even if the person is in paid
At home, this means the NHS pays for:
employment. It is paid no matter what other income,
benefits or savings a person has.
DHealthcare (e.g. community nurse, specialist therapist
or GP); and
Attendance Allowance (AA)
AA is paid if a person is over 65 and needs regular help
DPersonal care (e.g. personal carers, care workers).
with personal care due to illness or disability. It can also
be paid if a person cannot be left alone and needs regular
In a care home, the NHS pays for care home fees
supervision. There are two rates, lower and higher,
(including board and accommodation).
depending on the level of care that is required. It is paid
no matter what other income, benefits or savings a
Decisions about whether a person needs Continuing NHS
Care are made by health and social services staff involved
person has.
in the person’s care, in consultation with the person,
Special Rules
their carers and relatives. These people take part in
People with life-threatening illnesses may be able to apply
a comprehensive assessment of the person’s needs using
for DLA or AA under special rules. It means they can get
formal assessment tools to work out which services and
DLA or AA more quickly and easily, and will be paid at the
what support a person needs. This is sometimes referred to
higher rate. To apply under Special Rules a doctor’s medical
as ‘the banding process’.
report, called a DS1500, is sent with the claim form.
Most people who need Continuing NHS Care do so after
Special rules can be claimed without telling the person
having been cared for in hospital for an acute illness or
affected this is being done. There is a tick box in the
accident. For this reason assessments usually take place
DLA/AA claim form that signifies when this is the case.
when plans are being made for a person to leave hospital
The person receiving the benefit will receive a letter telling
and it appears they still need ongoing help and support.
them about their DLA or AA but they will not be told
anything about the Special Rules.
In 2007, The National Framework for NHS Continuing
Healthcare and NHS-funded Nursing Care was published.
This document suggests that there should be one national
approach on determining eligibility, with a common
process and national tools to support decision making.
9
Appendix 1
Triggers for referral of patients with
end stage heart failure
to specialist pallative care
Specialist Palliative Care Teams within South West London
accept and process referrals in a clear and equitable way.
Any member of staff can refer to a specialist palliative care
team after agreement by the patient and medical team
(Consultant or GP).
Triggers for referral to Specialist Palliative Care
Team include:
DPatient and medical team (Consultant or GP) aware of
and agree to referral to specialist palliative care team.
DPatient is aware of their diagnosis of heart failure and
the progressive nature of the disease has
been discussed.
Plus the patient should meet two or more of
the following:
DPatient has been assessed by health care team as
having severe heart failure symptoms.
DIt is anticipated that the patient is in the last 12 months
of life.
DThe patient continues to have complex symptom even after optimum heart failure treatment.
DThe patient has had repeated hospital admissions with symptoms of heart failure.
DThe patient / carer has emotional or spiritual needs
relating to their progressive illness.
DThere are issues relating to end of life planning e.g.
preferred place of care, writing of wills, withdrawal
of treatment.
10
Appendix 2
Diuretic Management in Worsening Heart Failure
and Peripheral Oedema
Rationale
Tips for Management of Resistant Oedema
1.Ensure compliance with both medications and
salt/fluid restriction.
Daily weight h> 1kg above dry weight
h Sustained over 2-3 days, with/without symptoms of
2.Avoid NSAIDS as these will reduce diuretic effect.
h dyspnoea and/or
h peripheral oedema
3.Increase frequency of doses (to decrease the post
and stable blood chemistry
diuretic salt retention period).
4.Furosemide absorption can vary between patients and
Increase Diuretics as follows:
bumetanide may be more predictable – particularly
Furosemide:
useful for converting from iv to oral medication where
Current Dose Increased to
40mgs od
80mgs od. 80mgs od. 80mgs am & 40mgs midday
80mgs am & 40mgs midday
80mgs bd
40mg furosemide = 1mg bumetanide.
5.Combination with thiazide diuretics (bendrofluazide 2.5mg daily/metolazone 2.5mg alternate days or twice weekly) is usually effective in patients resistant to high
Bumetanide: (dose may be split am/pm)
dose loop diuretics
Current Dose
Increased to
1mg od
2mgs od
2mg od
3mgs od 3mg od
4mgs od
7.IV infusion even more effective than bolus (even at 4mg od
5mgs od
equivalent doses as no post diuretic salt retention)
6.IV administration avoids problems with absorption
8.In advanced chronic renal failure larger doses may be
If an increased diuretic dose is sustained check U+Es
required than quoted above - as less diuretic is excreted
if appropriate.
into the urine where it has its effect - (up to 250mg
fuosemide bd may be required to achieve a
diuretic effect)
Ultimately management needs to reflect the patient’s
wishes and the imminence of dying. Where a patient
wants to be cared for / die at home, iv medications and
daily weights will not be appropriate. Subcutaneous
furosemide can be an option in the dying phase, where
needed for symptom management and comfort.
11
Helpful Resources
Johnson M, Lehman R (eds) (2006) Heart Failure and
Watson M, Lucas C, Hoy A (2006) Adult Palliative Care
Palliative Care: a team approach.
Guidance (second edition). Available from The Princess
Radcliffe Publishing Ltd, Oxon.
Alice Hospice, Esher, Surrey.
NHS Modernisation Agency (2004) Supportive and
National Institute for Health and Clinical Excellence.,
palliative care for advanced heart failure. Available at:
Chronic Heart Failure; Management of chronic heart failure
www.heart.nhs.uk/serviceimprovement/1338/4668/
in adults in primary and secondary care. 2003. National
palliative%20Care%20Framework.pdf
Collaborating Centre for Chronic Conditions: London
Members of the Working Group
Dr Lisa Anderson
Gill Tame
Consultant Cardiologist
Macmillan Specialist Nurse
St Georges Hospital NHS Trust
Sutton and Merton PCT
Mary Brice
Dr Jo Wells
Heart Failure Nurse Consultant
Palliative Care Nurse Consultant
Croydon PCT
The Princess Alice Hospice
Dr Amanda Free
Jennifer George
Macmillan GP Facilitator in Cancer and Palliative Care
Project Manager
GP Associate GSF Core Team, NHS EOL Initiative
SWL Cardiac Network
GP Principal Integrated Care Partnership, Epsom
Dr Lulu Kreeger
Consultant in Palliative Medicine
The Princess Alice Hospice / Kingston Hospital NHS Trust
Please send any comments or suggestions for future revisions to:
[email protected] or [email protected]
Copies of the guidelines can be found on the SWL Cardiac Network website
www.southwestlondoncardiacnetwork.nhs.uk